When cancer patients worry about'all the other things'

​Recently I visited an amazing project in Glasgow that is helping people affected by cancer get support for any worries they have, including physical problems but also emotional, financial and practical ones. It's called 'Improving the Cancer Journey' (ICJ). Afterwards I reflected on what a key role stories, conversation and writing play in the project.

Stories that move and convince

​When I sat down with Sandra McDermott, the head of the service, she started by telling me the experience that originally moved her to throw herself into it. She had seen a woman who was dying of cancer and who was due any moment to leave hospital to stay with her mother, as her own flat was damp. Within a couple of weeks, drawing on her own knowledge of local services, Sandra was able to arrange more suitable accommodation for the woman and her four children. When the end came, the woman died with her family around her in a warm and comfortable flat. Sandra also helped her make guardianship arrangements, so her children would be well looked after in future.

Listening to this story, I could see just how powerfully it demonstrated the need for the service. But Sandra also gave some convincing figures – the sheer numbers of people affected by cancer in a city the size of Glasgow, the billions spent on cancer treatment in the UK, especially in deprived areas, and the relatively modest cost of running a service like Improving the Cancer Journey. It was a good example of how numbers and stories can complement each other.

Sandra was herself clearly moved by the woman’s story and she told me she was nervous of telling it to an audience she was going to speak to in London the next day. She feared she would feel too upset. We agreed that what made it so moving probably had something to do with the sense of the community pulling together and making a difference to somebody in need. (I was glad to hear later that Sandra did manage to tell the woman's story in London.)​Sandra emphasised that it was luck that she had been there at the right moment for this particular woman. The experience convinced her of the need for a new joined-up service to make sure that others could get similar support.

Conversations that ease worry and point to help

I learned from Sandra and her colleagues how Improving the Cancer Journey works. Every person diagnosed with cancer in the Glasgow area now receives a letter inviting them to get in touch and to have a conversation with a link worker. So far, about 40% have taken up the offer. Family and friends who look after the person with cancer can also get help.

The link worker listens to what the person has to say and invites them to identify their needs and concerns, whether physical, practical, emotional or spiritual (in NHS-speak this is a “Holistic Needs Assessment”).

While in Glasgow, I met one of the link workers. Andy immediately struck me as a warm and open person with extensive local knowledge. I had no doubt whatsoever that he would set people at ease and listen with empathy. And the conversations would not be hurried – he told me they last up to 90 minutes, occasionally more than two hours.

Andy in the office

​During the conversation, Andy will make suggestions about which of more than 200 local services might be able to help. This could include things like housing or benefits advice, an exercise programme, or a way to meet other patients to ease feelings of isolation. In other words, the service is very much about helping with “all the other things” that typically trouble people who have been diagnosed with cancer.

One woman said that her biggest fear was that her daughter would not remember her after she had died. The link worker in this case suggested that mother and daughter create some kind of memory box together, which the daughter could keep and look at in years to come.

Paperwork that helps not hinders the conversation

I also noticed that the team makes good use of paperwork. One example is the simple one-page form providing people with a list of possible concerns. They can simply run down the list, ticking off the ones that apply.

Being sceptical about how paperwork is used, I asked Andy if he felt this checklist was helpful. He said, yes, it helps to get people started. It also makes it easy for him to explore with them which main concerns they want to focus on.

Also, there’s a space at the bottom where people can score their overall level of concern on a scale of 1 to 10 (1 = lowest, 10 = highest). This creates a “stress thermometer”, which gives an idea of how seriously worried they are now, but also becomes useful if they meet the link worker again, when they can provide a new score. The before-and-after comparison provides the team with a simple way of measuring how effective the service is (its 'impact').

At some point, patients are invited to record and share their personal story on a separate card, which simply asks, “Tell us briefly about your cancer experience.” This provides another measure of the service’s impact. It also allows the team to contact the person again and (with permission) use their story in the media to help publicise the service.​The project has even formed a group of patients who can help improve the service, and these patients have already helped to reword the letter sent to all those diagnosed with cancer.​All in all I felt that stories, conversations and intelligent uses of paperwork combine to make Improving the Cancer Journey very special. No wonder the team in Glasgow want it to spread all over the UK.

Patients' comments:

"I can honestly say that I got my life back thanks to all the help and support provided by ICJ."

"In many ways this was a tailor-made plan of support."

"Catherine was the first person outside my family and friends to whom I could talk about cancer and my fears for the future.